Disclaimer: The views, positions, and recommendations expressed in this article are based on my personal experiences and independent research. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA).
“I was medically retired from the U.S. Air Force and told, ‘You will never be able to do anything!’ I felt powerless, diminished, worthless.
However, that moment didn’t break me. With Marianne’s help, I used that put-down as a stepping stone—to help myself and others.”
This is not just my story. This is the story of thousands who live with chronic pain. And for many of us, there comes a turning point—the moment when survival is no longer enough, and we feel compelled to speak, act, and change the system.
That turning point is where activism begins.
Step 1: Recognize the Power of Your Lived Experience
You are more than a diagnosis. More than a patient. You are a witness.
Your story—what you’ve endured, what you’ve overcome, what you’ve fought for—has value. It holds insight that researchers, policy makers, and healthcare providers often miss.
“I live with pain, but I am not powerless.”
This is not just a phrase. It’s a rallying cry.
Write it. Say it. Own it.
Step 2: Find Your People
No one becomes an activist alone. I found strength and wisdom in communities like these:
- U.S. Pain Foundation – https://uspainfoundation.org/
- American Chronic Pain Association (ACPA) – https://www.acpanow.com/
- Well Connected (Covia/Front Porch virtual engagement) – https://frontporch.net/connect/well-connected/
- National Pain Advocacy Center – https://nationalpain.org/
- U.S. Society for the Study of Pain (USASP) – https://www.usasp.org/
- National Institutes of Health (NIH) – https://www.nih.gov/
- Learn more about the NIH HEAL Initiative here: https://heal.nih.gov/
- University of Michigan Chronic Pain & Fatigue Research Center – https://medicine.umich.edu/dept/chronic-pain-fatigue-research-center
- Stanford Division of Pain Medicine – https://med.stanford.edu/pain.html
- U.S. Department of Veterans Affairs Pain Research – https://www.research.va.gov/topics/pain.cfm
Whether you’re looking for peer support, research collaboration, or policy training, there’s a space for you. Start small. Sit in. Ask questions. You belong.
Step 3: Start Where You Are
Not everyone has to testify before Congress. Not everyone has to lead a nonprofit.
But maybe you can:
- Share your pain story in a support group
- Comment on a clinical trial design
- Send a letter to your insurance provider or elected official
- Mentor someone newly diagnosed
- Join a patient advisory board or research team
Every act counts. Every story matters.
Micro-activism is real activism.
Step 4: Learn and Lead
Activism grows with knowledge. Begin learning about:
- Clinical trials and how patients can be co-researchers
- Healthcare policy and how laws are shaped
- What terms like “patient-centered,” “PWLE,” and “co-design” mean
- How to influence guidelines and research standards (PCORI, NIH HEAL, etc.)
Then share what you’ve learned. That’s leadership. You don’t need a title to be a leader—just a voice, a story, and the courage to use both.
Step 5: Speak the Truth—and Challenge the Story
There’s power in saying:
“I’m not okay. The system isn’t working. And I won’t be silent anymore.”
Being seen is one thing. Being heard is another. But being a partner in change—that’s where transformation happens.
Ask yourself:
- Where are patients missing from the decision-making process?
- What would it look like if people with pain were at the center, not the sidelines?
- What needs to change—now?
Then step in.
Step 6: Keep Rest at the Core
We don’t heal by grinding harder. We change the world by honoring our limits.
“Rest is resistance.”
You don’t have to show up to everything. You don’t have to prove your worth. You are allowed to pause, to breathe, to grieve—and still be an activist.
Because this work is a relay, not a sprint. When you rest, someone else will carry the torch for a while. And you’ll pick it back up when you’re ready.
What I Wish I Had Known Then
When I first stepped into advocacy, I believed some myths:
- That I had to be an expert
- That my story didn’t count because it wasn’t dramatic enough
- That someone had to “invite” me in
Now I know: Lived experience is expertise.
You don’t wait for permission—you show up and speak up.
A Word of Thanks
Nothing I’ve done would be possible without the love, patience, and quiet strength of my wife and partner, Marianne.
When I couldn’t believe in myself, she did.
When I was ready to give up, she reminded me why I started.
Activism may be public, but its roots are often deeply personal—and she is mine.
You’ve Already Started
If you’ve ever:
- Advocated for yourself at a medical appointment
- Educated a friend or loved one about chronic pain
- Cried after being dismissed but chose to try again the next day…
You’re already doing it. You’re already resisting. You’re already an activist.
Final Words: A Blessing for the Journey
May you never doubt the power of your voice.
May your pain be honored, not ignored.
May you find community, courage, and clarity.
And may the world grow more just because you were in it.
Call to Action
Drop a comment. Share your story. Reach out if you’re ready to connect with groups doing this work. I’ll help you find your starting point.
Because it’s time we rewrite the story of chronic pain—from silence to strength, from isolation to impact.
We’re not just patients.
We are the change.
With the assistance of ChatGPT